The family of Henrietta Lacks pictured with author Rebecca Sloot.

The extended family of Henrietta Lacks with Rebecca Skloot (center), author of “The Immortal Life of Henrietta Lacks.” Photo courtesy of the Lacks family.

Henrietta Lacks’ Family to Share Perspectives at Igniting Hope Conference Sept. 30

By Ellen Goldbaum

Published September 22, 2023

“Stories like Henrietta Lacks often are whispers in our communities. ”
Veronica Robinson, great granddaughter of Henrietta Lacks

The complex scientific, racial and social issues surrounding the “immortal cells” of Henrietta Lacks will be explored by members of her family when they speak at UB’s sixth annual conference on Igniting Hope: Building A Healthy Just Community for All, set for Sept. 30 at the Jacobs School of Medicine and Biomedical Sciences.

The Lacks family members will speak during an afternoon panel discussion at the conference, which has become Buffalo’s primary forum for discussing, addressing and trying to mitigate the social determinants of health.

“The Igniting Hope conference has become an influential event for UB and our community,” says Timothy F. Murphy, MD, SUNY Distinguished Professor of medicine, director of the Clinical and Translational Science Institute, and director of the UB Community Health Equity Research Institute. “People from many walks of life and career stages are actively engaging with each other with the common goal: ending race-based health disparities and achieving health equity in Buffalo.”

President Satish K. Tripathi and Murphy will be among those making opening remarks at the conference, which will take place from 8 a.m. to 3:40 p.m.

The full conference agenda is available online; Registration is free and open to the public.

Keynote speakers are:

Rebecca Skloot’s book, “The Immortal Life of Henrietta Lacks,” forever changed what the family — and the world — knew about Lacks and her remarkable contributions to modern medicine.

  • Natalia Chalmers, chief dental officer, Centers for Medicare and Medicaid Services, who will speak at 9 a.m. on “Oral Health: An Evidence and Data-Driven Approach to Achieve Better Health, Equity and Fiscal Responsibility.”
  • Veronica Robinson and David Lacks Jr., the great granddaughter and grandson, respectively, of Henrietta Lacks, will speak at 1:50 p.m. at a panel on “Social Justice and Medical Ethics: What have we learned from the immortal life of Henrietta Lacks?”
  • Jamal B. Williams, PhD, assistant professor of psychiatry in the Jacobs School, will moderate the panel; afterward, Robinson and Lacks will sign copies of Rebecca Skloot’s book, “The Immortal Life of Henrietta Lacks,” which will be available at the event.

Lacks was the young, African American mother whose cancerous cell tissue has become, since her untimely death in 1951 at age 31, one of the most important medical research tools ever discovered. Without her knowledge or consent, tissue was removed during a biopsy she underwent at John Hopkins Medicine and shared with the hospital’s tissue lab.

Unlike all other cells that had been removed from patients, her cells (now named HeLa cells after her) didn’t die in the lab. Instead, they rapidly divided over and over, a phenomenon that to this day remains a unique medical mystery. HeLa cells have played a major role in the development of major medical advances ever since, from new cancer treatments to the invention of vaccines that protect against polio and COVID-19 to in vitro fertilization techniques.

While today Lacks family members are active in the National Institutes of Health’s HeLa Genome Committee, for decades they had no idea of the extraordinary role Henrietta played in modern medicine.

By telling their family story to audiences around the world, Lacks and Robinson are shining a light on the racism of health care in the 1950s while highlighting the social determinants of health that persist today — which conferences like Igniting Hope are working to address.

“People should come to Igniting Hope to be educated,” says Robinson, adding a specific message to young people of color considering a career in health care. “We need you,” she says. “We don’t have enough people who look like us in the health care system and a lot of people feel a lot more comfortable receiving care from those who look like them. It has a huge effect.”

Currently a nursing student at Baltimore City Community College, Robinson is a patients’ rights advocate who sees her work as focused on precision medicine and building trust with the medical community.

“Stories like Henrietta Lacks often are whispers in our communities,” she says, “whispers on how social determinants of health, such as gender, race and economic status, played key roles in the quality of care we receive.

“I am excited to collaborate with the University at Buffalo to share our common efforts in addressing the whispers on race-based health inequities and adverse social determinants of health that exist in our communities,” she says. “With the Igniting Hope conference, I intend on empowering those who have felt unheard or silenced to use their voice to advocate and influence policy.”

Adds Lacks: “I don’t know if the scientific community and people of color have ever had a good relationship, but how do we build that and how do we improve access to health care?

“Through the work that Veronica and I are doing in public, we try to bridge that gap.”